Betty R. Ferrell, RN, PhD, a research scientist at the City of Hope National Medical Center in Duarte, Calif., and her colleagues report that, in too many cases, cancer patients nearing the end of life get inadequate pain relief and not enough help meeting their psychological and spiritual needs.

Part of the problem, says Ferrell, is that our culture ? and our health care professionals ? understandably focus on curing disease, not on preparing for death with those patients that treatment can?t cure. "We?re so reaching for the cure, that in the process, we have ignored these issues of end-of-life care," says Ferrell, a member of the American Cancer Society?s (ACS) editorial board for health publications.

Pain medication may not be available

Some cancer patients endure pain that drugs could help relieve because they have no insurance or any other ways to pay for pain medication, she says. And, in some states, the combination of state medical board customs and laws aimed at keeping drug abusers from getting drugs may make doctors fear time-consuming scrutiny or the loss of their licenses if they prescribe pain-killing drugs more often than other doctors.

Access to high-quality end-of-life care through hospice programs also may be unavailable, according to Ferrell. Health-care providers concerned about violating laws seek assurances that any patients admitted to a hospice will live no longer than six months, refusing admittance when those assurances can?t be offered with certainty.

In addition, questions about end-of-life care tend to get pushed aside in medical and nursing school programs already crammed with other courses. Reviews of leading medical and nursing school textbooks found less than 2% of the content related to end-of-life topics, Ferrell says.

Problems will get worse

If things continue as they are, these problems will get worse because cancer rates generally are higher among older people, and the American population is getting older on average, according to the researcher.

Some improvements are being made. Magazine and newspaper articles are focusing on the issue and a recent Bill Moyers television special brought attention to end-of-life care. Some institutions, including Ferrell?s City of Hope, are training staff on how to help patients as they near the end of life.

"But major reform is needed," Ferrell says. "Much, much more needs to be done before the same excellent cancer care rightfully expected by all cancer patients will be delivered to those who have, despite everyone?s best efforts, not prevailed in their fight against cancer."

The solution to the problem of inadequate end-of-life care for cancer patients must begin with health care professionals, says Ferrell. She suggests medical and nursing schools address end-of-life issues more fully. And those already out of school should learn about end-of-life care. "As nurses, as physicians, this is a huge gap in our knowledge, and so each of us, as individual providers, has an obligation to learn," she says.

Reforms that could help

Laws dealing with pain medications need fine-tuning, also, says Ferrell. "There needs to be some regulatory oversight," she says, "but too much is inappropriate and makes it impossible for patients to get the relief they need. State medical boards, particularly, are so set on the issue of preventing drug abuse that they have not responded to what they need to do to help with this issue."

Ferrell also advocates changes in admission requirements at hospices, so that patients don?t have to give up hope for a cure before entering them. Patients and families also should try to become more aware of their options so they can be better advocates for themselves, says Ferrell. But too much of the burden should not be placed on the patients and families because they are already overwhelmed and exhausted by their long ordeal.

"It?s very important for us to continue to work toward curative treatments and prevention and long-term survivorship," Ferrell adds. "but it?s no longer acceptable for us to deny that 500,000 people die of this disease each year. The quality of their lives, and the quality of their deaths is really important. We simply must make these improvements."

Terri Ades, MS, RN, AOCN, director of health content and nursing staff for the ACS, agrees that patients deserve better end-of-life care. She says cancer organizations like ACS also can do their part. "To diminish suffering is part of our mission statement; it?s right there for everyone to see," she says. "As we learn more about the end-of-life needs of the cancer patient, we have embarked on new efforts addressing quality-of-life, pain control, and end-of-life care. Cancer patients should not have to suffer."